SOUTHERN ARIZONA NETWORK FOR DOWN SYNDROME

aka SANDS   |   Tucson, AZ   |  www.sandsaz.org

Mission

Our Mission
SANDS mission is the educate support, and advocate those is Southern Arizona affected by Down syndrome. SANDS pursues this goal by creating an open, supportive, and collaborative network connecting individuals and families with needed resources and information.

Ruling year info

2004

President

Allyson Schug

Main address

PO Box 17011

Tucson, AZ 85731 USA

Show more contact info

EIN

47-0932953

NTEE code info

Disabled Persons' Rights (R23)

Alliance/Advocacy Organizations (E01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Down syndrome is the least funded syndrome per capita nationally. Because of this, individuals with Down syndrome can fall through the cracks and not receive the help and services they need to be successful. Many times, insurance companies will not cover therapies or equipment that the individual needs. Additionally, government resources can be difficult to navigate and confusing for families. This often results in families having to carry immense financial and emotional burden when trying to provide resources for their loved one with Down syndrome.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Give It Back

Our Give it Back program provides grants for our families who may need assistance with medical equipment, therapies, training, educational assistance and more.

Population(s) Served
People with intellectual disabilities

This program provides informational resources to Parents who received a Down syndrome Diagnosis. We have different resources for the parent depending on if they are receiving a diagnosis before or after the birth of their child. We provide these resources to hospitals, OBGYN offices, and to the parents directly.

Population(s) Served
Health

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total number of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

Give It Back

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Related Program

Give It Back

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of groups/individuals benefiting from tools/resources/education materials provided

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

These numbers reference our New & Expectant Parent outreach program.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We are dedicated to being the primary source of information and support for individuals with Down syndrome in southern Arizona, working towards an improved quality of life and respect as valued members of society. We focus our efforts on connecting individuals and their families with needed services and resources, advocating locally and nationally, and raising public awareness.

We primarily work with families to help them achieve their goals. From prenatal diagnosis, to end of life care, we are there to help.

SANDS has several programs in place to assist our families. We provide new and expectant parent packets to help get them connected to services right away since early intervention is key to childhood development. We are connected with Down syndrome organizations on a national level to advocate for our community, as well as allow families to participate in the process as well.

Our biggest program is our Give it Back individual Grant program. This program provides funding for individuals with Down syndrome to provide resources that their insurance does not cover, and is too costly out of pocket. We help pay for assistive communication devices for those who are non-verbal. We help pay for therapies and their equipment, educational materials and programming, specialty eyeglasses, specialty car seats, medical equipment, and more. Most of these items are very costly, but can provide many benefits to these individuals to help them stay on track as much as possible.

We also host an annual Buddy Walk, it is our biggest fundraiser, but it is also a large resource fair for our families. This provides an opportunity for our families to connect with local services all in one place to help meet the needs of their child. It also provides adults with Down syndrome the ability to network with other community programs and possible employers.

We actively pursue grants and fundraising opportunities to keep our programs funded. We also partner with other disability organizations and attend community events when possible to connect our family with resources and meet new families. We send new parent packets to hospitals and have established relationships with the facilities so that they can call us when a family needs assistance. We also connect with DDD and DES to let them know what services we can provide their clients.

Due to COVID -19, our usual methods of measuring goals slightly shifted. Since we were not able to visit hospitals and new parents, those units of measure have paused. These goals will resume once hospitals begin to open up again.

However, we expanded our individual grant program to provide even more funding, and provided a year's worth of grants in just 3 months. We also added in a new grant program to provide financial assistance for families to work with a private tutor for their child. During COVID school shut downs, children with Down syndrome were left without any of their school supports. With online learning being next to impossible for so many of them, parents were struggling with ways to help their child. With this program, parents could choose in-person or online tutoring, and have their child work on their individual educational goals.

Over all, we saw a 300% increase in financial assistance that we provided to our families.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    We serve individuals with Down syndrome and their families.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We have found that our families want more social groups in relation to their child's age. We have begun implementing new social groups such as: 10 and under, tween/teen, and adults. We also plan to begin a siblings workshop and parent groups.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    It has increased their participation in our events as well as fundraising events. When they feel that we are meeting their individual needs, they want to continue to work with us and support our mission.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome,

Financials

SOUTHERN ARIZONA NETWORK FOR DOWN SYNDROME
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

SOUTHERN ARIZONA NETWORK FOR DOWN SYNDROME

Board of directors
as of 7/8/2021
SOURCE: Self-reported by organization
Board chair

Camille Stanbery

SANDS

Chelsea Hansen

Karen Poppe

Sharon Callaway

Chad McKinley

Jonathan Rivera

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 07/08/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian American/Pacific Islanders/Asian
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 07/08/2021

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.